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Baby Leah’s journey: ‘I knew she was special from the beginning’

For years Valerie Jacobsen’s mother had always wished for her daughter to have a baby girl. So when Valerie got pregnant shortly after her mother’s passing in late 2014, she knew it was a sign that her mom was watching over her family.

“I knew she was special from the beginning,” Valerie said about her daughter, Leah.

About 33 weeks into Valerie’s pregnancy, her doctors discovered that the baby’s small intestine was dilated, which usually indicates blockage. She was referred to the Midwest Fetal Care Center, where she had additional testing that determined her baby would need surgery shortly after birth. The surgical team explained their plan to deliver the baby via C-section and do an exploratory surgery so they could find where in the small intestine the blockage was located. Valerie was told her baby may need to be in the hospital for six weeks but they would know more after surgery. Valerie and her husband, Eric, worked closely with a perinatal physician to monitor her and the baby’s health in the following weeks.

On July 28, at 36 weeks and three days’ gestation, Valerie went into labor and baby Leah was born at The Mother Baby Center at Abbott Northwestern and Children’s Minnesota. Valerie delivered in an operating room suite so doctors could quickly triage Leah and take any necessary, immediate steps to keep her healthy. Shortly after Leah’s birth, Valerie heard a quick cry from Leah before she was rushed into the next room. Since her small intestine was blocked, the care team had to work quickly to suction out bile that had backed up and prevented her from breathing. She had a tube placed down her throat, and eventually her breathing stabilized. She was moved to Children’s Minnesota’s neonatal intensive care unit (NICU).

Leah had her first surgery at 30 hours old so doctors could locate the blockage. They discovered that while in utero the higher part of Leah’s small intestine didn’t get adequate blood flow and died, which caused it to separate. Because the lower portion hadn’t been used it was tiny and fragile, which meant Leah couldn’t feed and get nutrients normally. Doctors brought the dilated portion of Leah’s small intestine up and made a stoma, a surgical opening made through the skin of the abdomen (belly). She had a peripherally inserted central catheter (PICC) line set up to deliver nutrients.

After spending 11 days in the NICU, Leah was moved to Children’s Minnesota’s infant care center (ICC) to wait for her next surgery to reconnect the small intestine. Doctors hoped she would be able to have the surgery at 6 weeks old, but the sizes of the ends of the separated small intestine were dramatically different; and that difference needed to decrease before doctors could reconnect the pieces.

Leah spent 134 days in the ICC in total. Around 4 weeks old she needed a stoma-revision surgery because there was leakage, causing her skin to burn. During this second surgery, doctors found another partial blockage in the dilated part of her small intestine that they removed. They also brought up the lower part of the small intestine, creating a mucous fistula to enable re-feeding. Leah continued to get nutrients via a PICC line and a nasal gastric tube, and also through re-feeding to the lower part of the small intestine.

Looking at 7-month-old Leah today, you would never know she spent almost five months in the hospital and had multiple surgeries.

During her time in the ICC, Leah’s parents and brother, Lucas, as well as her care team of doctors, nurses, social workers and therapists, always were near. Leah loved massage and music therapies, and getting her room decorated by Children’s Minnesota staff for Halloween, Thanksgiving and Christmas. Leah was a social butterfly – smiling and happy, quickly winning the affection of everyone who met her.

In December, at nearly 5 months old, Leah was ready for what her parents hoped was her third and final surgery. This one would reconnect her small intestine. Her family desperately wanted to bring her home for the holidays, as she had already spent Halloween and Thanksgiving in the hospital. Valerie and Eric anxiously awaited news during surgery. Valerie remembers the feeling of immense joy when the surgeon came out and told her the surgery was successful. Just 10 days later, Leah left the hospital to go home, without needing a stoma or feeding devices.

Looking at 7-month-old Leah today, you would never know she spent almost five months in the hospital and had multiple surgeries. She loves being at home with her family and playing with her brother. It’s hard to get a rambunctious toddler boy to settle down, but when Lucas is around his sister he loves to put his arm around and take care of her.

“Now Leah’s scar is a happy story,” Valerie said. She is full of personality, and her emotional and physical development is where it should be for her age. “Our family is so thankful to the doctors, nurses and staff from Children’s Minnesota who helped Leah get out of the hospital and home with our family. Leah is always smiling, and her positive energy spreads to everyone around her. She is absolutely perfect.”

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